In July 2009, our beautiful son Adam was diagnosed with high-risk neuroblastoma, an aggressive children's cancer. Despite four years of treatment in the UK, Germany, and America, Adam sadly passed away on 11th July 2013 at home with his family. Visit Adam's Appeal at http://adamsappeal.org.

Thursday, 25 November 2010

As the weather turns colder and the festive season draws nearer I've found myself reflecting on the past twelve months.

This time last year we were between cycles of TVD. In total Adam had six cycles of this most hideous of chemotherapy cocktails, and it did very little for him except cause some irreversible heart damage.

I sometimes wonder why he stayed on it for so long, and although I think I know the answer I'd rather believe I'm wrong and it was something else. For although Adam's disease did not respond, it didn't progress either. And so 'stable' is deemed to be a positive response in itself, even though nobody could predict whether this would have been the case without anything at all. If you add to this the fact that the next drug combination on the list requires pre-approval and funding by the PCT, therein lies my answer.

Twelve months ago I was much less cynical, or much more naive, depending how you look at it. I do know I was pushing really hard for each and every cycle, querying any delays and questioning decisions that I didn't like. The longer Adam went without chemo the more I thought we would wake up one day to find him once again in agony. Agony that would almost inevitably signal the beginning of the end. This time last year I was desperate that we would arrange things so that Adam could spend Christmas at home. The reason was simply this; I honestly thought it would be his last. Believe me, it's a horrible place to be mentally.

As it turned out we brought Adam home late afternoon on Christmas Eve. He managed as best he could to enjoy Christmas and Boxing Day, before the effects of the chemotherapy kicked in and we took him up to Epsom General where he spent what remained of 2009.

It wasn't until February/March of this year when it really began to dawn on us that the chemotherapy wasn't having any material effect on Adam's disease and his path was not going to be one that followed that of the other children whose stories we'd come to know. We'd put off launching an appeal, telling ourselves we'd do it once Adam got through the first stage of treatment. By the time we'd completed six months of TVD we realised we needed to act, to ensure that when the time came, and wherever Adam's treatment needed to take us, we would have the money to do what we believed was best.

We will never be able to properly express our thanks to all of those people, to all of you, who
have raised such an enormous amount of money. I could literally spend the next hour reeling off names of people and organisations that have held events, raffles, quiz nights, collections, sponsored events, or made individual donations to the appeal. The list goes on and on. People are still getting in touch, wanting to help and to raise money for the appeal and we are just extremely grateful for every penny that has been, and continues to be, raised.

I sometimes wonder how people perceive us. Given that I have a child with a life-threatening illness I really shouldn't care, and yet I do (I think it all comes back to that question of it being impossible to express our gratitude, the whole thing is just too big). We launched the appeal with a huge fanfare in March, did tremendously well - exceeded every expectation I ever had - and then since the summer holidays we've kind of crawled back under the shell from whence we came, coming out occasionally to post things on Facebook or on here. The only thing I can say is this; when we started the appeal somebody said to me about getting the money raised quickly so I could go back to being a full-time Dad. At the time I kind of dismissed it, I was on a mission, spending hours and hours doing the appeal stuff, staying on top of everything. And then we reached the milestone of £300,000, and the summer holidays came, and almost without knowing it I stopped wanting to push to raise more and more money. Instead I wanted to go away with kids, and spend the time doing mundane, normal, everyday things. I think back to what that person said to me and realised she was right. First and foremost I needed to go back to just being Dad.

One thing I don't do any longer is worry about money. I used to. I used to wonder about using the house to pay for treatment abroad. And then what happens if that's not enough, if after the best options, or indeed only options, are abroad. This disease of Adam's is like that. You can reach the end of the road in the UK and there are possibilities in America that offer real hope still. I am talking about a major commitment and having to live there for as long as it takes. If you go for treatment at Memorial Sloan Kettering (MSK) they require an upfront deposit of $350,000 before they start treatment. If the disease spreads to the brain, MSK are the only place with any proven treatment, one that can still offer the possibility of a cure. Not just a few extra months, but a treatment designed to completely eradicate the cancer. Of course it comes at a price, something in the region of $1,000,000. I used to worry about all this stuff. Not just 'what if it happens?', but 'what if there is absolutely nothing we can do about it because we haven't got the money?'. There are other reasons why that might still be true; for example the hospital refuse to accept Adam as a patient, or he is unfit to travel. But the money one was always an issue for me as I thought it was something we could do something about. And that's what the appeal has done. In March, I didn't think we'd raise £300,000. Now I feel as though whatever we need to raise, whenever we need to raise it, there are people looking out for Adam who will do all they can to make it happen. Of course my greatest hope is that we are never faced with that situation.

So we approach December in a not totally dissimilar position to last year. Adam had his first ever clear bone marrow biopsy in June, and tumour surgery in September. The bulk of his metastatic disease, however, remains largely unchanged. Despite eighteen rounds of chemotherapy and high-dose internal radiation (131I-MIBG) therapy he still has widespread disease in his spine, pelvis and femurs.

On Friday and Saturday Adam will be in the Marsden for IV cyclophosphamide, both as a holding measure and to prime for a third and final stem-cell harvest. If we only get the same number of cells as the previous two harvests (~ 2 million) this will give us enough for a second transplant procedure in the future should that become necessary. If we don't do this now we will never have the opportunity to do so again unless Adam is completely cancer free. On Sunday 5th December he will go in for 3 or 4 days for the harvest itself. After that we await to hear what the plan is in terms of 2nd MIBG therapy followed by high-dose chemotherapy and transplant.

It could well be that this year Adam will be in hospital for Christmas. If he is we will just have to get on with making his Christmas, and that of his brother and sister, as good as we possibly can.

Thursday, 18 November 2010

Adam's blood counts on Wednesday were up. Platelets at 161 and Neutrophils at 0.9. Given what we know about Adam's counts this is good enough to go forward to chemotherapy followed by stem cell harvest.

But...

Adam can't have chemotherapy this weekend because the stem cell collection machines are booked out the week after next. Which means that although his blood counts are now good enough, we still cannot proceed.

Which means that he will now have gone two months without any treatment (since MIBG therapy). And his last chemotherapy will have been in August.

Which means we have to do it all again with his blood counts next Wednesday. And we know Adam's blood counts come with the same warning as investment products - they can go down as well as up.

Which means we will have had a delayed stem cell collection at The Royal Marsden in August because of scheduling and PCT funding, delayed tumour resection at St George's in September due to the surgeon being on holiday, delayed MIBG therapy at UCH in September due to staff shortages and now delayed chemotherapy and stem cell harvest The Royal Marsden due to availability of equipment.

None of which has anything to do with Adam, or his condition, or his treatment, or standard-of-care. For a little boy with an advanced form of one of the most aggressive cancers that's an awful lot of delays. For the parents of said little boy that's an awful lot of extra worry and anguish whilst their child isn't getting any of the treatment they know he needs.

Adam's blood counts have always been something of a mystery to me. The number of times we've waited for his Neutrophils to climb back up above 1 before being able to continue treatment. The 'magic' numbers are platelets above 100 and Neutrophils above 1. MIBG therapy supposedly has most impact on platelets and yet these recovered whilst the Neuts were still on the decline, down to 0.4 as of last Wednesday. This low count was responsible for Adam missing his planned slot for priming chemotherapy last weekend.

One could speculate that he has no immune system. His white blood cell count is just dormant. We had a complete blood work-up done on Adam in October (not on the NHS) before starting MIBG therapy. As part of this the lab performed 88 different food intolerance tests, each scored from 0 (no intolerance) to 4 (extreme intolerance). The tests are conducted by detection of an immune response to the introduction of each different food stuff. Adam scored zeros right across the board, 88 of them. Such results are extraordinarily rare. Our practitioner even asked the lab to double-check them. So maybe this lends weight to the hypothesis that Adam has no immune system. But then wouldn't we expect him to get ill more often? We don't live in a sterile bubble by any means, and yet Adam has only had one short-lived line infection since he was diagnosed last July. Bit of a sniffle now and again and a sickness bug that he caught off his sister, but only one proper infection.

So basically I just don't get it. I do know around 0.8 or 0.9 is Adam's ambient level post his induction chemotherapy. On more than one occasion I've found myself asking why 1 is good enough to have treatment, but 0.8 or 0.9 isn't, because I had little expectation that if Adam missed treatment because of such that the situation would be any different a week later. Of course, the doctors couldn't give me an answer because none of them knew. You get to realise when it's just one of those things that are documented in the protocol. An indicator that's been assigned a number by somebody somewhere, not a scientific rule. In the end I'd get the head of the unit to agree to proceed at .8 or .9. It's one of those times when knowing your child, and being able to advocate for them, makes a tangible difference. A shot of GCSF (growth factor that stimulates the bone marrow) and they'd immediately shoot up into the teens; like they were just waiting to be flushed out.

Friday, 12 November 2010

Adam remains quite well in himself and had the most brilliant birthday celebrations - more on those another day. His blood counts, or more specifically his neutrophils, remain too low for him to go forward for chemotherapy this weekend. His bloods will be checked again next Wednesday and we'll go from there.

Unfortunately nothing is ever as straight forward as it might seem. The hospital are effectively fully booked for procedures to the end of the year and Adam was being 'squeezed in' as one extra. Which was fine when the plan was for him to go in this coming weekend, things had been scheduled accordingly. But now everything will have to be shuffled around again to accommodate him. Oh well, not my problem I guess. At least not unless things get delayed because of something other than blood counts.